Wednesday, October 31, 2012

Last week, the basketball team from Benedictine High School came to the Sportable Spokes wheelchair basketball practice. It was such fun to see the tall, long-legged Benedictine boys try to fold themselves into the wheelchairs. It was also great to see the Spokes players show off a bit!

Monday, October 29, 2012

We've spent the last couple of days battening down the hatches and stocking up on water. Hurricane Sandy is on its way. We're already getting some rain and high winds (65+ mph) are expected in just a few hours. Hopefully before that arrives, I can get Ashley to the doctor's office..

Everyone on the East coast stay safe, and everyone else, please keep us in your prayers!

Friday, October 26, 2012

The IEP meeting that I requested to discuss accommodations which could be made to ensure Ashley no longer gets injured at school was held this week. I am not quite ready to write about the entire meeting, but I did want to show you something that I shared at the meeting.

I wanted to make sure that the IEP team members understood that the most current injury to Ashley's arm was ANOTHER example of the injuries that Ash has sustained at school - not the ONLY injury. I felt it was important to put into perspective the sum of injuries at school and then contrast that to the sum of injuries outside of school. So I presented this list of all the significant injuries Ashley has had since starting school at age 3. I did not include the fingertip bruises that have become commonplace from adults trying to move or reposition Ashley. Here is the list:

Significant injuries sustained by Ashley Nickerson during her school years from Preschool to Eleventh grade
Prepared October 24, 2012

Preschool:

While walking the school hallway with the principal, Ashley fell up a flight of steps. It was believed she broke her nose. The rescue squad was called and she was transported to the hospital emergency room. Fortunately her nose was not broken, but badly bruised. She had two black eyes for several weeks.

Kindergarten:

Ashley tripped in the classroom on the edge of a rug which had been placed over the classroom carpet. She fell into the edge of a table. Again she was transported to the ER. The doctor suspected she might have broken her eye socket bone (good eye) and immediately ordered a cat scan. Again thankfully, the bone was not broken, but she was badly bruised and again had a black eye.

First grade:

Ashley tripped while walking in the school hallway with her aide. She required two stitches in her upper lip as a result of the fall.

Second grade:

Ashley broke her two front teeth while riding the bus to school. She had to have both teeth capped as a result. Although I requested a copy of the video tape from the bus, my request was denied.

Three months after Ashley initially broke her two front teeth on the bus, she broke one of them again, also on the bus. Again, I was refused access to the videotape.

Third grade:

Ashley arrived home from school without her G-tube. I was told by the teacher and school administration that it absolutely could not have happened at school. Ashley had to be taken to the ER to have a new tube inserted. The next day, the original G-tube was found on the school playground.

Seventh grade:

I received a call from school that Ashley’s G-tube was found in her shirt (pulled out of her stoma). Again she was transported from school to the ER in an ambulance. The tube had been out all day and as a result the stoma had begun to close. The doctor was required to perform outpatient surgery to get it re-inserted.

2012 ESY Services:

Ashley arrived home with an abrasion about the size of an egg on the inside upper part of her right arm. It was bleeding slightly and blood had stained the shirt she was wearing. No note or phone call was received from school telling me what had happened. I purposely did not send a note the next day asking what had happened, but I did receive a phone call later that morning telling me that Ashley had just scraped her arm on the slide. I responded that the injury was present the prior day, and the only response was ‘oh’.

Eleventh grade:

Ashley’s arm was injured. The injury required two visits to the pediatrician, one to an orthopedist, one set of xrays, and a second attempt at xrays. According to school, “The investigators were unable to ascertain how the injury was sustained or what caused it. “

Tuesday, October 23, 2012

I mentioned a while back that Ashley had after a 10 year wait finally gotten a 'slot' on our state's Medicaid developmental disability waiver. That slot means she has access to more services, one of which is day support. While day support is not a necessity right now while Ashley is in school, it will be a great addition to her life when school ends. At least I hope that is true.

Day support is a place where adults with developmental disabilities spend their days. While it really irks me that such programs are a return to segregation, until we begin to see some real systems change in the US, day support programs do mean that the adults will not just sit home all day and all night. What I really hope is that I can find a good day support program and Ashley will not just trade sitting at home for sitting in a facility during the day.

So that I can begin to figure out how day support might be a service Ashley can use, I visited several of the programs in our area. Unfortunately, there are not a lot of such programs, and most of them are not good. But I was able to find one that I was happy with.

Unlike most of the facilities used by day support programs, A Grace Place was bright and cheery. The staff was friendly and seemed genuinely interested in their clients (I hate that term....). It seemed as if a lot of thought had gone into structuring the program to meet the needs of people with varying degrees of need. And, there appeared to be a real committment to integrating the 'clients' into the community in one way or another.

So, I could live with a place like A Grace Place, and I believe Ashley would enjoy spending some portion of her day there. But, there was one thing that bothered me, and it had nothing to do with the actual program, facilities or staff.

Every 'client' at A Grace Place is an adult. No one under the age of 18 is accepted into the program. I understand that and realize that the need for such programs exists for adults as well as children. My problem was personal - accepting that my sweet Ashley was soon to be an adult...

Her peers will no longer be the students at her school. Her peers will be people in their 20's, 30's, 40's, 50's and above. I'm not living in denial about Ashley growing up, but that doesn't mean I am happy to see the childhood years end. I want her to grow into the beautiful woman I know she will be, but a part of my heart longs for the sweet child that has graced my life for the past almost 16 years.

Perhaps the most difficult transition in all this will not be Ashley moving from school to adulthood, but rather mine for saying goodbye to the child and hello to the young adult.

Monday, October 22, 2012

When the United States Senate dedicated a building to former U.S. Senator Hubert Humphrey he remarked:

"...the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped. "

Last Speech of Hubert H. Humphrey
November 1, 1977
Washington, D.C.

If government includes our school systems, then we are flunking our moral test miserably.

Besides the issue with Ashley's arm injury (and she has had a LOT more injuries on school property that I will detail in a later post), this weekend I read two more stories from less than 100 miles from my home about children injured significantly at school.

The first was a 10 year old girl from Chesapeake, Va who had her hand forcefully removed from her desk. The child's hand caught on a notebook and was cut. At least in this case, the teacher was charged with assault.

The second, and even scarier, event occurred in Hampton, Va. A young teen girl with special needs arrived home with her leg broken in two places. Surgery, recovery and an infection kept the girl in the hospital for three weeks. The girl's mother is convinced the injury happened on the school bus, but the girl is unable to talk due to her disabilities. The school district's response? There is no evidence on the bus videotape of the girl being injured. Sounds suspiciously like Ashley's mysterious injury...

Friday, October 19, 2012

The investigation (and I use that term loosely) is complete and my school district has provided me with their results concerning Ashley's injury at school.

I'm sure you will be just as impressed as I was....

From the school principal:

"Human Resources has concluded their investigation. After a very thorough investigation where numerous teachers, aides, and staff members were interviewed, no conclusive evidence was found linking the injury sustained by your daughter to the Aide that was working with her. The investigators were unable to ascertain how the injury was sustained or what caused it. I sincerely wish that there was more information available as to what caused your daughter’s injury, as I understand your need to know how this happened. A report was filed with Child Protective Services, but they have not shared any results or whether they conducted an investigation with the school.

The aide that was working with your daughter has not been on the Tucker campus since the incident was reported to the administration.

If I can be of further assistance, please do not hesitate to contact me."

I immediately responded with a request for an IEP meeting (scheduled for next Wednesday), and have put in a call to my attorney.

Thursday, October 18, 2012

Do you remember me writing about Ashley being injured at school by a school employee? Yea, it was a while ago - September 17th to be exact. A full month ago.

I also provided a few updates along the way, but still have not gotten much information from the school district. Whenever I would email or call, the answer was the same, "We're conducting a thorough investigation", and "We can't share anything because it is a personnel matter."

I've continued to push for answers and finally this week was told by the school principal that the 'investigation' would be finished by Friday of this week. The principal assured me that he would contact me by the end of the day Friday.

We'll see...but trust me, you all will be some of the first to hear the results!

Today is Thursday - come back late tomorrow and we'll see if the 'results of the investigation' are an adequate explanation.

I've been so pleased recently to find doctors who understand the challenges of getting a child with significant special needs to an appointment.

They are the doctors whose staff asks if you would like the first appointment of the morning or the first appointment after lunch break for your child who doesn't handle waiting very well.

They are the doctor's whose offices have automatic opening doors for the parents who are pushing a large wheelchair, carrying things, and sometimes holding the hand of another child.

They are the doctor's staff who offer to hold something, to help push a wheelchair.

They are the doctors who speak to your child even if your child doesn't see, hear or speak.

They are the doctors with a light touch, a soft word, an encouragement. Doctors who don't lie about something hurting, but who comfort after the hurt.

They are the doctors who let you mail in your co-payment rather than digging through a bag while holding a chair, another child, and maybe even suctioning a child. They are also the doctors whose staff will offer to fill out forms for you instead of handing you a clipboard and a pen.

They are the nurses who don't mind putting pressure over a bleed no matter how long it takes rather than insisting on a bandage that your child will pull off in under 10 seconds.

They are the doctors who will accept your typed list of medications, prior surgeries, and medical history and not forcing you to enter the same information on their forms.

They are the doctors whose offices have a quiet room for your child that gets upset if there is too much stimulation in the regular waiting area.

They are the doctors who will electronically send a prescription to your pharmacy or at the very least, call it in so you don't have to keep up with the paper script and so the medication will be ready when you arrive at the pharmacy.

They are the doctor's receptionists that remember your child's name and say hello everytime you walk in, not just demand to see your insurance card.

They are doctors, nurses, and staff who "get it", and I am so grateful when I find people like that.

What about you? What makes your doctor visits better for both you and your child?

Monday, October 15, 2012

This post is dedicated to my dear friend, Lynnette, and her beautiful daughter, Brooke.

If you think I am going to go away quietly, you are so wrong. If you think you can wait me out, again you are wrong.

By now you should realize that I will do absolutely anything to ensure my daughter's rights are not ignored. You may think you know her, and maybe you do a tiny little bit. But you have no idea of the true and complete person my daughter is.

You've never held her as she struggled for breath or was burning with fever. You've never seen the fear in her eyes as the doctor takes her away for surgery. You've never experienced the love in her eyes at a trusting touch. You've never heard her laugh, her deep belly laugh, when the dog licks her face. You've never seen her flutter her eyelids when a cute boy walks by, or seen the distress brought on by seizure after seizure. You've never really experienced how her whole face lights up when she finally understands a concept she was being taught.

You are her teacher in title but not in action.

If my daughter learns anything from you, it would be the following:

Adults lie

Adults drink alcohol and then tell their students that they are the reason

Teachers don't always like teaching nor do they always like their students

Teachers can be rude and sneaky

What you may not understand or choose to accept is that I am a teacher also. I teach children just like my daughter all the time. I take my job very seriously, and I want all my students to know they are respected and loved and that I have high expectations for them. I will try hundreds of different approaches to find the one best way to teach a particular student.

Why? Because I believe in them. I want to see their faces light up. I want them to know they matter.

My daughter deserves no less. If you refuse to be the type of teacher she needs, just step aside.

I will win this battle. I have right on my side. Never, ever doubt that.

Wednesday, October 10, 2012

Tuesday, October 9, 2012

I was finally able to get Ashley's blood work done this morning - just in time for the neurologist's visit this afternoon. Ever since the school staff person injured her Ashley's arm, Ashley would freak out if anyone touched her. And of course to get blood drawn, someone has to hold her arm, put the blue tourniquet on her, and then stick her with a needle.

Before the arm injury, she was very good about getting blood work done. She would hold her arm out, point to the back of her hand indicating that's where she wanted to be stuck, and would then point out the color of her veins and the blood that was coming out. When the draw was finished, she would always sign to the technician, "good work."

Though today wasn't as bad as the previous two times I had tried to get it done post-injury, she was still hesitant. And that indicates to me that her sense of trust has really been damaged.

This is one of the things that drives me crazy about having to have so many people in the lives of our children with special needs. As parents, we rely on and truly hope that all the adults that move in and out of our childrens' lives are worthy of our trust, and more important, our child's trust. For the most part in Ashley's life, that has been the case. But often it hasn't.

And this injury inflicted by a staff person - a person who has been by Ashley's side for several years - a person she trusted completely - has really hurt her, and I don't mean just physically. I'm really not sure if the emotional damage can be fully repaired. I hope with time, and with a lot of trustworthy, caring adults in her life, that it can. But I just don't know...

And equally as distressing as Ashley's loss of trust is my realization that I cannot always keep her safe. No matter how close I stay near her - no matter how involved I am in her education - no matter how OCD I get about her care, there will always be those times when I cannot be there.

I told her when I adopted her that I would keep her safe always. I lied, though I didn't realize or fully accept that it was a lie at that point. I can't always keep her safe. I can't always be there. And that breaks my heart...

Monday, October 8, 2012

I had it all planned. Friday was the start of a three day weekend for me, and the contractor had told me that Ashley's and Ronnie's room would be finished, and back to pre-water leak condition. I would have three days to get furniture moved back into the rooms, furniture moved back into place in the rest of the house, and the mountain of supplies that kept coming regardless of the fact that I had no where to store them finally put away.

But no - that was not meant to be.

The painter was here until 6:30pm Friday night. When he called it a day, none of the molding had been painted, and the closet shelves and bar had not been installed. The next day, in the bright sunlight, I also noticed that another coat of paint will be needed in Ashley's room, and something that still amazes me, the painter had not removed any nails or outlet covers - just painted right over them! I'm no painter but even I know better than that.

So, I've left two emails for the contractor, and I'll see what he has to say.

To say that I am extremely disappointed is an understatement. And, I will have to wait another week to get the house back the way that I want it. Ashley is never going to want to leave my room, and Ronnie has enjoyed having a TV and game system in the guest room in which he has had to stay, and will probably try to convince me not to move him back.

I'm just really tired of this whole situation, and want our normal, crazy life back.

Thursday, October 4, 2012

How would you react/handle this situation? You are in a meeting with your boss and most of your coworkers. Your boss keeps saying things like, "That's so ______." Fill in the blank with the denigrating word of your choice - a word that is used to characterize a group of individuals, a word that would be taken as derogatory, a word that is construed as politically incorrect by many, a word that often takes root in teenager slang.

I can think of several words to fit, and you probably can also. So just pick one and then tell me what, if anything, you would do in that particular situation.

Wednesday, October 3, 2012

Ashley is checking out the work on her room - work required because our AC unit in the attic had a water leak that destroyed walls, ceilings and closets. We're getting close to getting things back together - THANK GOD!!

Tuesday, October 2, 2012

Do you monitor your child's texting and computer use? If so, and if you have ever found anything objectionable, what was your reaction?

One of the conditions for my children (now all teenagers) of having a smart phone and a Facebook account was that everything would be subject to my scrutiny. I can at any time review Facebook posts and friend lists, and can check out any text message or pictures taken/received on the phone.

When I listed the rules for Ronnie, he didn't seem overly concerned with any of them. But perhaps with the passage of time, he has forgotten that unannounced searches could happen because this morning I found something very objectionable on his phone.

He had sent a text to a girl in his class, and the text included language that is unacceptable and a request for a picture, a picture that would also be unacceptable. Sadly, the girl would more than likely comply with his request.

Ronnie and I discussed why the message was inappropriate (although I think he already knew why), and I told him that he would not be able to use his phone for three days. And, if I ever find anything similar on his phone or computer again, I told him he would lose the device permanently.

Ronnie is a champion pouter, so I am sure that is the face that will greet me each day until he gets the phone back. He's not a bad kid, and he is probably just testing the waters of life. But, he's got to learn what is acceptable and what isn't. And better to learn that at home than to have the school discover the messages, or worse.

Have any of you had to address the issue of sexting or inappropriate emailing and sharing of pictures? If so, what has your response been?

Monday, October 1, 2012

Ronnie spent the weekend trying out two new sports - wheelchair fencing and wheelchair rugby. He liked fencing but rugby won his heart. And why wouldn't it - it involved chasing a ball and ramming wheelchairs into other wheelchairs! Make sure not to miss the videos at the end of this post. (And a big thanks to Chip for the pictures and the video!)

Ashley Lynn

Why is this blog named Pipecleaner Dreams?

Who I am...

I am Ashley's Mom and the luckiest person in the world. I've often heard that if one is 'good' in this world, they will receive their rewards in the next. But, I have already received my reward - I have been given the privilege of raising this beautiful child. I'm a single parent of 5 children, 4 of whom have significant disabilities. They are all so very special and each has their own piece of my heart.